Gee, what’s the best way to determine whether you have a sexually transmitted disease (STD)? How about asking a bunch of total strangers? Even better, how about showing a bunch of total strangers pictures of your genitals?
That’s essentially what many people seem to be doing, according to a research letter just published in JAMA. The research letter presented a study that revealed two main things:
- A number of people are using Reddit, a social media site with over 330 million active users a month, to crowdsource questions about whether they have an STD and what to do.
- If you are on Reddit, be very careful which specific online discussion community (other known as a subreddit) you join. Remember the subreddit entitled STD is not for Star Trek Discussion.
That’s because if you participate in the r/STD subreddit, instead of seeing pictures of the Enterprise and crew members with red uniforms, you may see photos of genitals and red lesions instead. Not exactly the same thing. Talk about going where no one has gone before.
The team conducting the study consisted of researchers from the University of California, San Diego (Alicia L. Nobles, PhD, MS, Eric C. Leas, PhD, MPH, Christopher A. Longhurst, MD, MS, Davey M. Smith, MD, MAS, and John W. Ayers, PhD, MA), the Institute for Disease Modeling (Benjamin M. Althouse, PhD, ScM), and Johns Hopkins University (Mark Dredze, PhD). They collected all posts to the r/STD subreddit from the inception of the subreddit (November 2010) through February 2019, which amounted to 16,979 total posts. From all of these posts, they then chose a random sample of 500 posts and found that in 58%, the person posting the post (otherwise known as the poster) had asked everyone else in the subreddit for help with an STD diagnosis. Close to a third (31%) of these asks were more, ahem, colorful, including images of the posters’ physical signs.
Here’s an example from the research letter of one such post: “Help! What is this? In the past month I have developed these papules on my butt close to my vagina. Normally my skin is very clear. Can anyone help identify this? Is it herpes?”
Yeah, posting a picture of papules on your butt isn’t quite the same as posting a picture of avocado toast. The poster ended up receiving two replies with the first coming 5 hours 38 minutes after the initial post. Overall, most (87%) of the requests for a crowd-diagnosis had gotten replies with the median time to a response being 3.04 hours.
Were all of these posters people who just weren’t able to see doctors? Apparently, no. A fifth (20%) seemed to be seeking second opinions after already having received a diagnosis from a real health professional. For example, there was this post provided by the research letter: “Is this ingrown hairs or genital warts? I went to the doc a few days ago and he said it’s genital warts. I’m floored because I always use condoms. I recently shaved so the doctor could be wrong and they’re ingrown hairs? Here’s a pic. I’d appreciate a second opinion. If it is warts, I may try apple cider vinegar first.” This poster didn’t just receive a second opinion or a third opinion. There were a total of 12 responses with the first response coming just 12 minutes after the original post. Ah, but as they say with sushi and boy band songs, quantity doesn’t necessarily mean quality. Shouldn’t a second opinion come from a real doctor?
Then there was this disturbing example offered by the research letter, “I went to the clinic to get tested. I’m really scared because they said my results showed ‘HIV-1 Confirmation.’ I have to go back and get another test but I’m wondering is the doc wrong, do you think I have HIV?” Um, you could have all five infinity stones, the gauntlet, Doctor Strange and Charles Xavier on loan, and still not be able to tell if a stranger has HIV over the Internet without a real test.
Not all of the posts were asks for diagnoses. Some wanted advice on a plan of action. For example, the research letter included the following post: “My previous girlfriend had high-risk HPV. My doc told me that guys have nothing to worry about and everyone has it. But, the internet says it gives women cancer. Do I need to tell future partners? I’m terrified I could pass this along to a future girlfriend.” Try telling any future girlfriends that you get medical advice from asking random people on Reddit.
Sure, crowdsourcing can give you good answers for many different kinds of questions. For example, there’s this answer to Paris Hilton’s crowdsourcing ask:
Some answers indeed are game changers.
But when it comes medical questions, asking strangers can be a dangerous game. Crowdsourcing on the Internet or social media can be like going to a street corner or a random Happy Hour and shouting out your question. Imagine saying, “everyone, put down your beers for a second. You don’t know me but I would like to show you a picture of my genitals. Please shout out what you think is going on with my genitals. Oh, and by the way, don’t tell me anything about yourself.” At least in a Happy Hour, you can see the people whom you are asking. On the Internet, surprise, surprise, anyone can pose as anyone. You have no idea of the accuracy of the answers or the qualifications of the people providing the answers.
Chances are real doctors are not hanging out on the r/STD reddit looking for lesions to diagnose. Therefore, such a setting could actually select for people who just don’t have the necessary expertise. Worse yet, you could be engaging with people looking to make someone else’s life miserable.
Getting wrong advice about STDs can be bad not only for you but for everyone else you contact. In this case, contact doesn’t mean a firm hand shake but a nudge-nudge know-what-I-mean-type-of-contact. What if proper diagnosis and treatment are delayed? What if you spend days smearing apply cider on yourself when you need real medical treatment? What if you end spreading the STD to others in the meantime?
It can seem much easier to get an answer on Reddit than see a real doctor. After all, you can ask a question anonymously. You can get many answers rather quickly. You don’t have to pay any extra. Heck, you don’t even have to lift your butt, except maybe to photograph it. But you often get what you pay for, as the saying goes. There are certain things too important to leave up to crowdsourcing such as whom you should marry, whether you should give away your BTS ticket, and whether you have an STD.